title: A qualitative participatory study to identify experiences of coronary heart disease patients to support the development of online self-management services.
abstract: OBJECTIVE
  Web-based self-management services remain underutilized in current practice. Our aim was to gain insight into disease and self-management experiences of patients in early and progressive stages of coronary heart disease (CHD), to understand moderating effects of daily life experiences on the utilization of web-based self-management services and preconditions for use.
  
  
  METHODS
  We applied generative research techniques, which stem from the field of product design and are characterized by the use of creative processes. Three groups of patients with CHD received a sensitizing package to document and reflect on their health, and were subsequently either interviewed or participated in a focus group session.
  
  
  RESULTS
  In total, 23 patients participated in this study. Emerging themes were (1) fear for recurrent events, (2) experiences with professional care, (3) the perceived inability to prevent disease progression, (4) the desire to go on living without thinking about the disease every day, (5) the social environment as a barrier to or facilitator for self-management, and (6) the need for information tailored to personal preferences.
  
  
  CONCLUSIONS
  How patients experience their disease varies between stable and post-acute stages, as well as between early and progressive stages of CHD. Patients in post-acute stages of the disease seem to be most amenable to support, while patients in stable stages want to live their life without being reminded of their disease. In the context of self-management, web-based services should be adapted to the variation in needs that occur in the different stages of CHD and new strategies to fit such services to these needs should be developed. Furthermore, they should be tailored to patients' individual health situation and preferences, support patient empowerment, and manage expectations regarding the progression of their disease.
authors.affiliation: Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands. Electronic address: s.vosbergen@amc.uva.nl.
authors.forename: Sandra
authors.initials: S
authors.lastname: Vosbergen
authors.forename: Jolien
authors.initials: J
authors.lastname: Janzen
authors.forename: Pieter Jan
authors.initials: PJ
authors.lastname: Stappers
authors.forename: Myra C B
authors.initials: MC
authors.lastname: van Zwieten
authors.forename: Joyca
authors.initials: J
authors.lastname: Lacroix
authors.forename: Karin
authors.initials: K
authors.lastname: Idema
authors.forename: Inge
authors.initials: I
authors.lastname: van den Broek
authors.forename: Hareld M C
authors.initials: HM
authors.lastname: Kemps
authors.forename: Roderik A
authors.initials: RA
authors.lastname: Kraaijenhagen
authors.forename: Niels
authors.initials: N
authors.lastname: Peek
mesh_terms: D000368:Aged; D003327:Coronary Disease / Q000523:psychology* / Q000628:therapy; D019468:Disease Management; D005260:Female; D017144:Focus Groups / Q000706:statistics & numerical data*; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010358:Patient Participation; D036301:Qualitative Research; D012648:Self Care / Q000523:psychology*; D012944:Social Support
keywords: Coronary heart disease (CHD); Generative techniques; Internet; Patient experiences; Qualitative research; Self-management